Journal article
Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP)
Health and Quality of Life Outcomes, Vol.10(1), pp.1-11
2012
PMID: 22284545
Abstract
Background: Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group.
Methods: Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability.
Results: The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60.
Conclusions: The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a larger sample are recommended to confirm the factor structure of the measure. Longitudinal studies to establish responsiveness and predictive validity should also be undertaken.
Details
- Title
- Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP)
- Authors
- Tara Clinton-McHarg (Corresponding Author) - University of Newcastle AustraliaMariko Carey (Author) - University of Newcastle AustraliaRob Sanson-Fisher (Author) - Hunter Medical Research InstituteCatherine D'Este (Author) - University of Newcastle AustraliaAnthony Shakeshaft (Author) - UNSW Sydney
- Publication details
- Health and Quality of Life Outcomes, Vol.10(1), pp.1-11
- Publisher
- BioMed Central Ltd.
- Date published
- 2012
- DOI
- 10.1186/1477-7525-10-13
- ISSN
- 1477-7525
- PMID
- 22284545
- Copyright note
- © 2012 Clinton-McHarg et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
- Organisation Unit
- School of Health - Psychology
- Language
- English
- Record Identifier
- 991241466302621
- Output Type
- Journal article
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